CSL Ltd Vice President of Research Mr Michael Wilson, Hon Maria Vamvakinou MP for Calwell and Agnes Nsofwa ASCA Executive Director
ASCA - Official Launch report
Thank you for taking the time to come and witness the official Launch of our association. The event was only successful because of your presence. If you did not manage to attend, please see our report and help support our cause. Please take your time to read this report and if you have any questions, don’t hesitate to get in touch with us.
The launch was a resounding success, with over 100 delegates ranging from clinicians across different hospitals, patients and their families, college students, partnering organisations and other supporters attending.
The event was officially opened by Honourable Maria Vamvakinou Federal Member of Parliament for Calwell.
We were able to highlight the need to have this advocacy group and outlined our objectives detailing our immediate goals which were:
Advocate for a sickle cell disease surveillance database
Advocate for National sickle cell disease management guidelines
Advocate for sickle cell prenatal screening in all Australian hospitals
We were also able to encourage attendees to join our cause, some of which have already signed up as members. Some clinicians and other organisations in the audience have also approached us to collaborate with them to raise awareness about this disease.
This was only possible due to the enthusiastic support, drive and dedication of CSL Limited. We wish to acknowledge the fact that without the support and sponsorship by CSL, the event was not going to be a success. We hope that the representatives from CSL found this event as important and as inspiring as we did.
Hon Maria Vamvakinou’s address
Hon Maria Vamvakinou Federal member for Calwell officially launched ASCA. She co-convenes the Australian Parliamentary Friendship groups for multiculturalism and has a long track record as a health advocate.
Given her past involvement with RCH and Thalassaemia advocacy Maria was keen to take on sickle cell advocacy after Agnes the founder of ASCA talked to her about the rare disease and its growing impact in the community.
She was honoured to officiate the launch which she considered a family affair because Mapalo, Agnes’ daughter goes to Good Samaritan primary school and CSL the main sponsor for the launch event are all in her constituency.
Maria emphasised the importance of advocacy of rare disease. Unless communities are aware of rare conditions they will not know what they are dealing with she said. “The changing nature of Australia’s migration has brought conditions that affect only certain peoples. It is important to learn and raise awareness on these conditions as the composition of our communities change”. Talking about the need for a national record for sickle cell patients that ASCA is advocating for Maria insisted on the importance of collecting data that we can track and learn from that empowers research.
Maria is pleased to be associated with ASCA and is mindful that people that do advocacy work are mainly volunteers with an emotional connection and need community support. Advocacy helps the collective to get things done. She is hopeful that the collaboration of the doctors and scientists at RCH and ASCA will progress advances in sickle cell research and be beneficial to the global community as well. She congratulated ASCA and looks forward to working with the organisation to build on the medical excellence this country is known for.
Dr. Anthea Greenway's Keynote presentation
Dr Anthea Greenway
Peter Leo with his family, He is living with SCD
Dr Anthea Greenway was our keynote speaker for the event. Dr Anthea Greenway is a Paediatric Haematologist at The Royal Children's Hospital and Monash Medical Centre in Melbourne. Dr Greenway was looking after Mapalo from 2013 until February this year. Dr Greenway explained what sickle cell disease is. She further explained what other cells in the body affected by this disease and not just the red blood cells. She emphasised the need to have a surveillance data base and stated that even though the Monash health under the haemoglobinopathy registry are trying to capture the number of sickle cell disease in Australia, the current 128 patients on the registry is “just the tip of an iceberg”. She further explained the different SCD management protocol and emphasised the great work that the drug hydroxyurea has been doing to help with managing this disease. Furthermore, she explained other management processes that work hand in hand with pharmaceutical management mentioning:
Early interventions in all types of infections
Other managements like regular or as needed blood transfusions
Red cell exchange using an apheresis machine
She also talked about the exciting times ahead in terms of what is happening in scd research overseas, like gene editing
Dr Greenway also talked about the challenges clinicians like her are facing when managing scd patients in Australia. The most difficult part is that patients come from all over the world and their manifestations are different and this causes difficulty in terms of managing. She stated that complications vary between patients.
The lack of a prenatal screening in most hospitals in Australia means that most young patients present with symptoms in mid childhood and complications are not found until later, making patients at risk.
The lack of data also means that hospitals have no idea how many doctors / nurses to train hence most hospitals do not have clinicians that understand the disease.
As scd is considered a rare disease in Australia most primary care professionals do not understand the
disease. “There is need to have local champions in the communities and hospital to ensure awareness” she said. Finally Dr Greenway said that it was important for organisations like ASCA to continue raising awareness and work with hospitals to bring awareness to this disease here in Australia.
Australian Sickle Cell Advocacy Inc is a patient advocacy group formed to fill the gap of highlighting the rising numbers of Sickle Cell Disease in Australia. Although considered a rare disease in Australia, sickle cell disease is affecting a lot of people due to an increase in migration from at risk countries and number are rising.
ASCA Board Members and Executive Members with Hon Vamvakinou
During this launch, we are able to engage with our attendees to emphasise why we formed this association. ASCA will continue to engage with people in discussing sickle cell disorder, not only in Australia but all over the world. We also want to encourage research scientists to continue working on finding other cure options for this condition that are less invasive and easily accessible for all: Our aims of continued awareness are:
Bridge the gap between the people affected by SCD and medical providers,
Help remove the stigma associated with living with SCD,
Provide information to encourage screening in at-risk individuals who will be empowered to make informed decisions,
Provide education to communities and relevant stakeholders to raise awareness about sickle cell disease in Australia
Advocate for every hospital to proactively screen potentially at-risk parents and babies during gestation, or at birth,
Advocate for a standardised approach to disease management programs where all symptoms are proactively monitored and managed,
Gain recognition and access to services for chronic conditions by The Department of Health / Medicare.
Organise fundraising activities that contribute towards sickle cell research.
ASCA will provide up to date information to people from risk areas of having SCD. We also pledge to provide information to people currently living with SCD and their families. We will also work with treating hospitals by providing educational sessions to other clinicians who may not be familiar with SCD. We will achieve this by:
Providing the latest information on sickle cell disorder symptoms and complications.
Providing the most current research information, targeting progress in treatment and pain management,
Providing regular social media updates to ensure those affected have access to key information,
Promoting awareness of the condition via annual sickle cell awareness day and events
Working with community groups and hospitals to provide a platform where awareness of sickle cell disorder can be promoted
Work with relevant authorities to provide education to Emergency department clinicians
Raising awareness in primary care e.g. GPs, Paediatrician, and Physicians to provide educational materials in assisting them with Managing Sickle Cell Disease
Working with relevant authorities to bring awareness for Medical Students and Nursing students
Working with different hospitals and Multicultural communities to identify local champions in our communities and hospitals to promote awareness
Promote blood donations from minority communities
We pledge to connect with people living with sickle cell disease and their by families by being a support source for people in need. We will achieve this by:
Providing emotional and moral support through community.
Having support group meetings, patient visitations, family get together gatherings and any other form of support that will improve the well-being of affected community members.
Providing information and referrals to patients and carers by linking them to known doctors and other professionals.
Having quarterly information sessions in communities that are likely to be affected by this condition.
Sharing common experiences by having a buddy program of pairing young sickle cell patients with older sickle cell patients to address their concerns as they transition to different age groups.
Encouraging our members or individuals coming from at-risk backgrounds to go for genetic testing and / or counselling for them to know their sickle cell status.
The way forward
As we embark on the journey of fulfilling our objectives, we continue to ask for your support so that together we continue to shine the light on this disease and change the face of sickle cell disease in Australia. Most importantly, if you originate from a risk area where sickle cell disease is prevalent, we ask you to know your sickle cell status. All you need to do is get a specific blood test from your local GP. For those people dealing with this disease in one way or another, we ask you to join us and we will walk this journey together. Get in touch with us as we start support group meetings from August 2019. Call us or email us or get in touch with your treating haematologist. Looking forward to hearing from you.